Questions about Raynauds: I was... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Questions about Raynauds

Louise96becky profile image
6 Replies

I was  diagnosed with Raynauds last year (but had it since I was about 2) and have some questions that Google can't answer.

Does the heat affect Raynauds?

Will it get worse every year? (Feels like it does) 

I ride a motorbike, any advice on keeping warm? 

Any advice would be amazing thank you! 

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Louise96becky profile image
Louise96becky
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6 Replies
zenabb profile image
zenabb

I have Raynaud's and I am very bad in the heat. I was in Corsica one summer and had to spend my nights in front of the deep freeze (door open of course). I wasn't very popular. I is a question of our blood not circulating properly.

Craftyflower profile image
Craftyflower

I get affected in hot weather too, my fingers and toes swell so much that I feel the blood squelching as I bend my fingers. Best thing I find that helps is keeping fit and active to keep your blood moving, if I'm stationary for any length of time it gets very uncomfortable. I used to ride a scooter and it's worth investing in some good thermal windproof biking gloves, and some thin liners underneath. Also keep your core warm not just your extremities, if your whole body is cold your fingers and toes have got no chance!

Louise96becky profile image
Louise96becky in reply to Craftyflower

Ah thank you, that's what I get when I'm hot, but websites only tell you about the cold so I was really confused when iv had problems having a hot shower. 

dianekjs profile image
dianekjs

If you feel progression of your Raynaud's symptoms, you should have complete antibody testing if you haven't already done so. Primary Raynaud's such as you have (since you've had it since childhood) can occasionally lead to the development of a connective tissue disease such as limited systemic sclerosis (scleroderma). Cold generally affects Raynaud's more commonly than heat, although air conditioning in warm weather is a problem for many who suffer from the disease. Heat is rarely a problem for me, but extreme or sudden changes in temperature can be. It's important to keep your core warm and take precautions to prevent attacks whenever possible. Keep warm gloves and socks in your purse and glove compartment, and buy some "Hot Hands" to keep with you at all times. Attacks accelerate the vascular damage that can endanger your fingertips. Hope you find interventions that can help to control your symptoms. 

Louise96becky profile image
Louise96becky in reply to dianekjs

I'll have to look into having that done, thank you 

Discontent profile image
Discontent

discontent@122510@gmail.com I have a form of Raynauds in my middle digits, (tissue has been eaten, but months later skin is growing back) and yes for me the cold air HURTS no matter if it is air-condition. To ease the pain (open nerve endings) I was given a 5% renal cream, that WORKS. Strange for a finger but I am so very grateful that I can sleep, and go outside in the weather (California) I still wear mittens, but not as much. I am also on a multi-vitamin, antibiotic (150 mgs for infection to the bone) and Percocet 10 mgs as needed. Remember to keep youself covered up so that any openings of air will not enter so please stay warm. God bless.

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